A blog about Central Pain Syndrome, commonly referrred to as CPS. Written by a patient who has acquired it as the result of a thalamic stroke, it is intended to be a site for discussion of its symptoms, its causes, its horros, its treatments (or lack thereof), and a personal journal of my own attempts to understand and ameliorate a life lived in the constant burning of the fires of Hell.

It’s been my greatest fear living in this 1917 “Dutch NeoColonial” home. Ever since my stroke, I have walked down the stairs backwards, because the railing is on the right-hand side as you go up. That’s easy and useful enough when you’re going up the stairs and need some stability. But when you’re going down the stairs, I still need the railing on my right, the stronger side. There isn’t one; just plain wall. Immediately after my stroke, looked into what it would take to install a railing on the wall side: about $125 and some guys willing to find time for the project.But it was never a high priority item. So I’ve been walking down the stairs backwards ever since.

Unfortunately, I haven’t been able to grow eyes in the back of my head during the time. So today, when I stepped on a slipper one of the guys had left on the treads, my left foot slipped out, the weakened-from-multiple-sprains-and-tears right ankle twisted out, and down I went! All that flashed through my mind was the name, “Lee.” Lee was a dear friend of mine that I may have mentioned. She died about a year and a half ago from a fall down an identical set of stairs; hers were in Highland Park, on the other side of New Brunswick. She took a tumble one Sunday morning and smashed her head into the wall and baseboard of the first landing. .As my head hit the newel post, all I could do was pray.

I was fortunate today. A large box full of my old journals and notebooks – one which I had been asking to have transferred to the attic – was still sitting on the landing. I banged into it, rather than the plaster or wood, and it was giving, not hard. (There was a reason for saving all the junk after all, it seems.) So I managed to reconnoiter after falling, assess the damage and get up. All I’d ended up with was some bad bruises, an aching head, and a twisted ankle.

But it also left me with a shaky sense of my own well-being. It’s one thing to live in a cluttered house full of possessions. It’s a totally different thing to live in a house full of stuff that no one wants to give up, but which no one is able to, or cares to, maintain. Ad to that a physically disabled person, and you’re writing a script for all sorts of health problems, if not outright tragedy.

Now I’m not saying that we are as bad as “Hoarders,” with rooms so full of stuff from floor to ceiling that you can’t even go into them, or must leave little paths and landing zones. We aren’t even close. But all it takes is the one roller skate, as the old sight-gag sets it up, for the little scamp’s father to take a hilarious pratfall. Pratfalls are always supposed to be hilarious to the viewer, har de har har.Fall on the stairs, however,

The question of how stairs can be made safer is a perplexing one. Moving is not an option, unless the court forces us. Should I upholster the wall of the landing with down-filled pillows? We’ve been having a discussion of sorts of the CPS Alliance about the benefits – and even the possibility – of strength training for CPS and spasticity patients. One member, Nigel, described how he had his stroked side literally strapped to weight-training machinery after his stroke, so that he could work out. Six years later, he says that he has been able to rewire his brain so that he is as strong as ever. He thinks that any members who aren’t following his example are just complaining about a situation they, too, could fix. While I may not agree with his attitude, I am glad to find *some* feedback on the benefit of strength training for post-stroke patients. I do not have access to physiotherapists or other trainers, so have to content with what programs I can develop for myself. There are many other people in my same situation, and that is the difficulty facing us.

Of course, having us fall down the stairs and die would be a useful way to lower the disability rolls. Perhaps that is the America we are living in now. At least Tai Chi is still free, and very effective at building strength and balance. It’s even recommended by the CDC as a preventative against slips and falls.

The vertebrae from between my shoulder blades, down to the base of my spine (sans one) were fused, with a Harrington Rod “emplacement.” The vertebrae were exposed, and then the first layer of bone was chipped away. The Harrington Rod operated a bit like an auto jack. One end was hammered into the vertebrae at the top, and the other end was hammered into the lowest vertebrae. A device that measured the pressure being placed on your spine was inserted into the cerebrospinal fluid, and then the whole device was ratcheted up. Once a certain level of pressure was reached, the surgeon – Dr. Hugo A Keim – had to stop, lest the patient become paralyzed. Then the whole ghastly mess was covered with bone chips (actually, more like matchsticks) that had been removed from my pelvic bone. I was kept in the hospital for one month, while it healed, and then put into a full body cast, which went from my chin, and around the back of my head, to my groin. There was a diamond-shaped hole cut out of the plaster right above my diaphragm, so that I could breathe. .The “procedure” was done at Columbia-Presbyterian Hospital, .and was state of the art at the time. Now, it seems almost medieval; the Harrington Rod hasn’t been used since the early ’90s.

I spent the summer in bed, watching the 1972 Munich Olympics (with their horrible and shocking end) and the Fischer-Spassky chess matches, as they were narrated live on Channel 13 by Shelby Lyman. In September, it was back to school, so I wouldn’t miss my Junior year. After nine months, I was cut out of the cast, and it was assumed that the spinal fusion and I would live happily ever after. Of course, things never work out that way, especially not with medical procedures. Eighteen months later, I bent over and picked up a box at the pharmacy, and heard a “popping” sound. Later that night, I tried to get up from my desk after an evening of pre-calculus homework, and fell right down on the floor. I had slipped the disc at the base of my spine, the one Dr Keim had left unfused for mobility’s sake. That slipped disc has bothered me ever since, but I am one of the lucky ones. Too many of the girls who had scoliosis fusions have had almost perpetual pain and difficulty with their backs for decades afterwards. Audrey, one of the girls I met there and who became one of my closest friends, has even had to have the Harrington Rod removed because it broke!

I had forgotten all about this anniversary until I heard the WNYC news reader announce yesterday that the Puerto Rican Day Parade would be tieing up traffic uptown. I was in the hospital, lying in a bed by a window, on the day of the Puerto Rican Day Parade in 1972. Columbia-Presbyterian was way uptown; I could see the marquee of the Apollo Theater when I looked north out of the window. The Puerto Rican Day Parade went right by the building that day in June. At least I *think* it did, because I wasn’t able to look at it;, since I couldn’t get to the window to look out. . I wasn’t able to stand up post-surgery for three weeks. But I did hear the noise, the music, the cheering. The sound of celebratory happiness rose up to the 5th floor, where the Children’s Orthopedic Ward was located. (At 15, I was still a few months shy of being on the Adult Ward.But that is a different story.)

That happiness was a mocking contrast to my own situation at the time. I remember very little of the post-operative week, following the surgery, because it consisted primarily of pain and drugs. Th memories that I can recall involve my pain, or those of my roommates. At 15, I’d had some physical pain, mainly cut knees and a tonsillectomy at age five. There was certainly pain associated with the tracheotomy performed without anesthesia at 8 weeks, but it wasn’t anything I could consciously remember. I’d tried to prepare mentally for the pain that would inevitably follow getting your back opened all the way up, your spine scraped down to the cord, a metal device hammered into it and used to jack it up, and then getting it all reconstructed with bone toothpicks and thread. But how can any person that young understand excruciating pain, unless they have experienced it? I was in Catholic school, and pretty spiritual, even if it was in a forbidden way, through iconoclastic study of other religions. I was even a pantheist and a Deist, having moved to the concept that there is One God underlying all religions, and in all Nature. (These are dangerous heresies in the RC church, because they eliminate the need for the entire expensive clergy, from priests to Pope.) I prayed to God for the strength to bear it all. I had a very particular prayer, that I clung to: “God, I will bear any pain that you will give me. Just give me wisdom in return.”

Being in the Children’s Ward, as the oldest child, meant that I was with children from newborns to 14 year olds who were suffering from severe orthopedic problems. There was a whole room full of cribs, each board-hard baby mattress occupied by an infant who needed orthopedic surgery to correct a birth defects hip displasias; spinal issues; problems with their shoulders and arms, their ribcages, hips,their legs, their feet. There were children who were there only briefly, in and out, with one-day surgeries and swift releases home to concerned parents. There was a 12 year old girl in our four-bed room, who had come in for removal of a bone “bump” on her shin. It turned out to be the sort of aggressive bone cancer that took Edward Kennedy Jr’s leg in 1973, the following year Linda went into the operating room expecting a simple bone-spur removal, same as her family. The surgeons ended up taking her leg off above the knee. The scene where she awoke from her anesthesia, and was told by her mother and grandmother that her leg had been amputated, was pitiful. She screamed and sobbed inconsolably. Four days later, though, she was gamely trying to walk on her new prosthesis, and she cheerfully left the hospital two weeks before I did, There were the long timers, kids who had been on the ward for months, like the 10 year old who had fallen onto the subway tracks and lost both his legs. He rolled himself around the ward on a stretcher, stopping int to every room to chatter with the occupants. He couldn’t, of course, enter the room that required complete and absolute sterile conditions. That was where the 11 year old boy who’d lost two limbs to electrocution was recuperating. He’d been climbing a tree after a thunderstorm, and when he got about twenty-five feet up, he’d grabbed a live electrical wire instead of a branch. Not only was he electrocuted, he fell out of the tree, and suffered severe orthopedic damage.There was the boy, perhaps around 10, who also had scoliosis – the only boy I ever knew who had it. (For some reason, scoliosis seemed to be a problem mainly affecting girls.) This boy (I think his name was Tim) had dived off the side of a boat while he was on vacation with his parents in the Caribbean, back when he was 7 or so. Somehow, the propellers of ab oat (the same ones? I can’t remember) sliced open his back, cutting his muscles in the lower back. He healed, but as he grew, the muscles on that side knit together with far less give than those on the other side. They pulled his spine to one side, so that he had developed a very rapid and severe curvature. Why did he get a spinal fusion the length of his back, rather than treatment for the bunched-up, deeply scarred muscles? One can only guess.

Then there was Mickey, a tiny child of about three who had his right arm in an elaborate cast that encased his entire right arm and part of his body, with a metal rod embedded in the plaster that kept his arm extended and bent. He’d been in the hospital since his birth, because his drug-addicted mother had abandoned him when she was told the extent of his birth defects. Mickey had been raised by the nurses, had had eight surgeries, and was the happiest, sunniest, funniest three-year-old I’d ever met. He was in a little wheelchair, and rolled himself around the ward with his one free hand, hanging out at the Nurses’ Station, visiting in all the rooms, keeping up a practically endless flow of patter. He and I used to watch “Sesame Street” and “The Electric Company” together, which was something I did with my two brothers back home. I often wonder what happened to Linda, who had a cancer with an extremely poor prognosis, or to Mickey.

Being on the Children’s Ward was a blunt announcement to me: “You can’t feel sorry for yourself. There are people right here – much younger and more innocent than you – who have it much, much worse than you do. No complaining.” I was familiar with the title “I Am A Camera,” because Cabaret had been released in February, of that year, based on Isherwood’s book “Berlin Stories” and von Druten’s play “I Am A Camera.” I adopted that slogan as my purpose, and kept detailed journals of the whole journey, from my first diagnoses, through the search for doctors who understood scoliosis (which was not well known at that time), to the hospital, the surgery, and its aftermath. I haven’t been able to read them for decades.

When I actually had the surgery, and was suffering post-operative pain, I lost my ability to step back from what was happening, in order to journalize it. All I had strength to do was keep from crying out. Controlling myself so as not to scare the younger children was very important to me; I’d already been demonstrating to younger children that there was nothing to be afraid of, that there was a big kid who didn’t cry and didn’t scream, because it wasn’t that bad or scary. That reassurance is very important to little children, especially when it comes from other children. Kids don’t believe grown-ups when they tell you about how much pain an event will cause, once they find out how often grown-ups lie about whether or not something is going to hurt. Children have been betrayed by that promise (“Just a quick little pinch…”),, with its stupid lollipop reward for “being so brave” as the bribe that it supposed to distract us. What helps a child in pain is someone who says “I know; I understand,” someone who strokes them gently and comfortingly, and someone who tells them, “Yes, it really really hurts, but I believe in you. You can survive this. You can hold on through this. You will survive.”

At the time of my spinal surgery, there was no one in my life who performed that function except for myself. My father didn’t know how to. My mother had been hospitalized with a severe nervous breakdown, which we now recognize as bipolar disorder, three weeks before my surgery. My friends tried to help, but they were scared themselves. The fact that such misfortune could happen to me meant that misfortune could barge into their lives, as well. I worked hard to be strong for them, for the children in the ward, for the overworked nurses who were solicitous, but who had other, more injured children, to care for and comfort.

So my pain was something I kept to myself. It was supreme; it blotted out everything else. All I could do was writhe, with mouth clenched tight, with tears leaking down my cheeks. Since it was so overwhelming, I realized that the only thing to do was to let go into it, ride it like a wave, experience it, and then move on. So I had a mantra, one I have used all my life:

:This agony is disappearing even as you feel it. Each second you experience it is already behind you. Each moment you feel this pain is one moment you will never have to feel it again.

This is the approach I have used with every pain I’ve experienced throughout my adult life.There have only been two situations in which it didn’t work.One was the non-progressing labor I had when Jake was born. The other has been Central Pain Syndrome.

With non-progressive labor, your mind knows very well what is happening. In a highly specific and rather rare event, your body is turning itself inside out in order to give birth to another person. In order to accomplish this, your body will push and push and push, ever more intensely, until you either have your baby or die. That’s it: those are the only two choices your body gives you. Give birth, or die. It was almost a comforting thought, because I knew (in the conscious moments between the intense pushing) that the situation would end. There was a definite resolution; it wouldn’t be that long in coming.(Even so, I was in hard pushing labor from 11 at night until 5 in the morning, before my obstetrician called for the operating room.) I was either going to have a baby, or expire. My life was saved that early dawn by a Caesarean surgery. But I found out the way that so many women, throughout human history, have died in childbirth. It was simply out of their hands. They either had to give birth, or die. If there was no medical intervention to save them, they died.

This is all backstory, to explain some of my prior involvement with extreme, even tortuous, pain. . Central Pain Syndrome is unlike any of the pains that I’ve ever had. I don’t know if having past pain can somehow prepare you for life with CPS, except as a matter of comparison. The comparison between Central Pain and all of these other events is not one of intensity or level. It is one of *psychology,* of the nature and purpose of pain itself. For one thing, there is no definite conclusion that you can see to CPS, as I could with the spinal fusion (you’ll “be healed and well) or childbirth (baby or rapid death). You are never healed from CPS; right now it is incurable. There is no medical intervention that can help you, as a Caesarean does with a “baby malposition..” You can’t get treated, not even with surgery, and relax, knowing that even as it hurts like a sumbitch now, that gradually the pain will subside until it vanishes.

Most of all, you know that CPS pain doesn’t mean that you are dying. It may feel as if you are dying. You may wonder why it doesn’t kill you. How can something that hurts so much, so intensely, mean that you aren’t dying? You expect that your heart will give out, or your brain will stroke, or you’ll lapse into shock, or some other system will stop. You may wish that you would die, even if it’s only to stop the sensations of feeling every pain that Man has ever described, all at once. That is obviously the reason that suicide has been the frequent finale of so many lives endured with CPS, even the life of the first woman to ever have her case written up clinically.

The biggest difference between Central Pain Syndrome and every other pain I have ever had is that my lifelong talismanic mantra doesn’t work at all:

Each moment you feel this agony is one moment you will never have to feel it again.

“Each moment” is now “Every moment.” The vision of a destination where the pain will be gone becomes the vision of Death itself, because there is no other place where the pain will stop, and you will be healed. Hannah Arendt made an memorable comment on torture’s inability to be described to another, that pain itself disappears as soon as we have experienced it. When pain is in the past, we can only recall that we felt it, and how horrible it was. But we cannot recall the actual sensations of the pain. With CPS, that moment of recollection never arrives, because there is never a moment when the pain itself is past.

Central Pain Syndrome is the Terminator of diseases. The way Reese describes that unstoppable force to Sarah Connor: is true of CPS: “Listen, and understand. That Terminator is out there. It can’t be bargained with. It can’t be reasoned with. It doesn’t feel pity, or remorse, or fear. And it absolutely will not stop, ever, until you are dead.”

In many ways, I still feel the sense of responsibility towards those in the same suffering condition that I inhabit, yet are too powerless, too weak, too overwhelmed to be able to do anything to protect or save themselves. A psychiatrist might say that it’s a pattern that I was born into, and have re-created. In the original family situation, I had no choice: my siblings and I were born into a house run by damaged and sometimes dangerous; parents. But after that, I ended up visualizing myself in that situation, and re-creating that role of protector of the powerless and voice for the mute, whether as the model of fearlessness and strength for the children on the 5th floor Children’s Orthopedic Ward, or the person who could create a voice for the unrepresented graduate students in the Modern Language Association.

All this biography, then, is simply a run-up to the work I must do to make sure that Central Pain Syndrome survivors get recognition, respect, and representation, from both the general public and the medical profession. Thank God there are strong people on the tean, walking this road with me. For the first time in my life, I do not have to carry the burden all alone.

Sometimes CPS, with all its pains and their vagaries, is too depressing for me to contemplate much. It is especially crushing on those days when the CPS has morphed once again, and evolved a new terrible sensation that I cannot control. At times like this, when it is causing yet another onerous symptom, I simply want to distract myself from its truth in any way possible. I want to forget the whole thing: its prevalence, how it’s ignored by the medical profession, how the treatments for it are so spare and so limited in choice, and do so little. I want to escape its entire burden. There are days when I just cannot *deal*. I slink away; I hide. It’s as if having the pain is enough in itself. Must there be all the psychological burdens added on top of it?

If you’ve done any reading about the Salem Witch Trials and their aftermath, you probably have read about the torture that was used to kill Giles Corey, who was “prest to death.” (Nineteen other people were hanged, all on the basis of :”spectral evidence.”) The method used to kill Corey was an ancient English common law form of execution, used for those who had been convicted but refused to admit their guilt. It was officially called “peine forte et dure”. The condemned was put against a flat surface, had a large board placed over him, and massive, heavy rocks were placed on top of the board. He was gradually squeezed or pressed to death. It took two days for Corey to die. (The details are gruesome; I’ll let you follow the link, if you really want images in your head that will be hard to take, and difficult to shake..)

There are some days that it feels as if that is what CPS is doing to me. CPS metamorphoses over its existence – always adding yet anther rock to the pile. Three nights ago, I was sitting at my desk, and suddenly it felt as if my left hand and my left foot were actually *burning,* as in “lit on fire.” Each of my toes felt like they had been turned into candles, and were flaming at the end like tapers. What can you do in a situation like that? I doubled the gabapentin, had a gin and tried to go to sleep, listening to Jonathan Cecil’s reading of P.G. Wodehouse’s “Heart of a Goof.” (I have learned more about golf listening to this set of Wodehouse stories than I ever knew prior to his explanations of its charms. It makes me want to actually take golf lessons, something I was never before interested in doing.)

Thank God for Wodehouse. What a perfectly marvelous distraction he is! Listening to his work on my iPod as I fall asleep is like being read fairy tales for grownups. He wrote over a hundred novels, and I am working my way through as many as I can find in audio recordings. There is no pain in Wodehouse, except for the heartbreak of lost love – and you can be sure the sweethearts will always be together happily when the book ends. No one is ever ill. No one is ever broke and left that way, to die in penury and misery. The world is full of opportunity. The worst problem a person can face is that some disapproving relative will somehow appear, to glare down their nose and shake a finger harshly at the good-natured hero or heroine. In a Wodehouse book, everything will work out.The lovers always end up together, because every Wodehouse book has a happy ending.

I have been very downcast, because I cannot see any happy endings right now: not in my own personal life, which is comprised, first and foremost, of pain every day, pain that is often so bad that it overshadows everything.I cannot see it in our country’s future, or in the world’s future.

Hopelessness is the cause of depression, and for the past several days I have been feeling on the hopeless side of the coin. That is why I haven’t written. It is why I haven’t returned calls. It’s probably why I can’t clean off my desk, and why I can’t decide how to reshelve books.

Well, now that I have at least shamefacedly admitted my failure of good spirits, it is time to pick myself up and begin to work again. Can I, like Corey, not only endure the pain, but command my executioners, “More weight!”?

Back in 1989, this commercial began to run for what is really a very valuable service. But the hamminess of the acting made it an immediate sensation because of its mockability. The immortal moment is, of course, when “Mrs Fletcher,” lying in the bathroom, calls out, “I’ve fallen, and I can’t get up!”

Yesterday, the discussion on the CPS Alliance group was off falling. Today it’s about the *physical* ct of getting up. So many of us cannot get up when we are in a prone position! It doesn’t matter if we’ve fallen, or gotten down on the ground willingly. The ability to get back up on our feet is severely compromised. Zooky and Ursula mentioned this when they described their falling incidents, and then Ursula asked if there were other members, non-strokees, who have problems arising form a prone position.” First Kat, and then KittyMom replied:

“I haven’t been able to get up from a prone position since I was about 28; I’m 41 now. Never had a stroke. I did have a spinal injury that didn’t seem to be TOO bad in 2002; tendons torn from neck to hips, but nothing broken and no hospitalization. I’ve had severe & increasing pain my entire life, and just last month I finally found a doctor that actually wants to run actual diagnostics on me and send me to specialists; he’s sure that the *main* cause of all of this for me is autoimmune (though the car accident in 2002 certainly didn’t help matters any), and considering my life-long symptoms and my family history, I’ve believed this for years.

“Even to get out of bed, I have to first carefully roll over onto my side and then use my arms to slowly ease myself to a sitting position before I can get up. Forget the floor, there’s NO WAY that I can get up from there unless someone assists me almost to the point of picking me up themselves, and yes, I live in daily fear of falling and especially when I am home alone! It’s not just because of the pain (though that is a contributor)… I simply can’t get my body to do what my mind tells it to do.” – Kat

KittyMom concurred:

“I Ican get into the prone position and up, but very, very carefully and as long as I have a pillow or cushion of sorts to place my knees on. But when getting up I have to have a chair, or something stable to pull myself up.

Mobility is becoming more and more difficult and painful, as CPS continues to ‘evolve’ from (vascular malformation) thalamic bleed and surgery 2 yrs. ago. Muscles of affected side are stiff. Am retrying Baclofen v-e-r-y slowly, hoping for some relief, as well as tolerance for side effects. Too soon to tell…”

This has been true for me, as well, ever since I hit the floor following my stroke. I have learned over the past four years the ways in which I can roll over, so that my “good side” is lying on the floor. Then I can push myself up, with great difficulty. It is always easier to get up off the ground when there is a prop to use. I plan ahead when I am doing something that involves work close to ground level, making sure that there will be a chair, a step stool, a bucket, or some other dependable object that I can use as an aid to push against.

One thing I’ve also noticed is that it’s even more difficult to get up from a seated position that is low to the ground, such as the lower steps of a ladder – anything lower than 18 inches. It’s as if the knee and thigh on my CPS side just don’t have sufficient strength to lift me.

Is there anyone with CPS who does *not* have a problem with rising from a prone or seated position low to the floor? I am trying to figure out whether it is a problem that can be solved, or at least improved, with either weight loss or increased muscle strength.

I’ve asked on the CPSA, and will ask on the FB page. Is there anyone with CPS who does not have a problem with being able to push up their body weight? Or can actually do a chin-up? What about a push-up? Has their ability to stand up improved over time, or degraded? Here I’ve been thinking that the problem of my inability to rise was because of my weight, or my lack of muscle tone. But what if it has nothing to do with weight or muscle fitness? What if whatever controls the pain signals also controls that motor ability?

It’s one more question about CPS. Certainly, within my lifetime, it’s a question that could be answered, considering how fast neuroscience is developing. Of course, something like a world-wide depression would certainly halt such research. So much is ultimately way beyond our ability to influence, and is the result of global and historical contingencies:: the sheer luck of our having been born in this place here and at this moment in time. Will our culture and our society believe that there is a disease that consists of unrelenting, extreme, horrible pain, period? Will they turn away? Will they refuse to believe it, or blame it on the victims, or say it must be psychosomatic? Will they refuse to treat it, to care about the people who have it, to fund any research or contribute any money? Will they just shrug and say, “Well, everybody’s got problems”?

Sometimes I feel like our entire nation has fallen, and it can’t get up.

The topic of discussion on the CPSA group this morning has been falling – not only the fear of it, but the actual consequences of it. Fatigue is so common among us who have suffered some type of “brain injury” that there might as well be some kind of special club, where we could all hang out. We’d understand when someone else fell into a narcoleptic trance during a conversation, or left a game or other event for a nap of several minutes or a few hours.This fatigue isn’t limited to those of us who have suffered strokes or brain injuries; it is the inevitable consequence of continuous, considerable pain. Pain is exhausting. By the end of the day, many of us are both strung out from the bone-deep weariness, yet unable to sleep because the pain has gotten so much more intense as the day has progressed.

But there is extreme danger that accompanies the fatigue, and it’s not that we will fall asleep at our desks. It is that we will fall, period.The stories that were traded this morning were from members that fell and could not get up – and who had to lie there for hours, because there was no one to help them. Here’s Ursula’s story, the one that started the thread:

DURING THE NIGHT I FELL. I WELL KNOW THAT I CANNOT GET UP ON MY OWN, WHEN I AM FLAT ON THE FLOOR. I DID NOT KNOW HOW AND WHERE I HAD LANDED, BUT AS I FELT AROUND, I REALIZED I WAS UP AGAINST THE BACK WALL OF THE BATHROOM, CONFIRMED BY THE FALLEN “RAISED” TOILET SEAT THAT LAY NEXT TO ME. WHILE STARTING TO SLIDE SLOWLY BACKWARDS AN INCH AT A TIME, I NOW BEGAN CALLING FOR MY HUSBAND AND BANGING THE TOILET SEAT AGAINST SOMETHING, I STILL DON’T KNOW WHAT. DEEP SILENCE!. I LAY THERE FOR ABOUT TWO HOURS, FROM TIME TO TIME SHRIEKING “DAD, DAD”. I HAD FINALLY, PAINFULLY WORKED MY WAY TOWARDS THE DOOR OPENING AND LAY NOW ON THE CARPET OF MY BEDROOM, A ROOM CLOSER TO MY HUSBAND. I WAS IN UTTER DESPAIR, WHEN I RENEWED MY SCREAMING. HIS BATHROOM IS ON THE OTHER SIDE OF THE HOUSE. I HEARD THE COCO CROWING 4 TIMES, AND THOUGHT “SOON IT WILL BE MORNING.” MOUTH SO DRY, I FIGURED I SHOULD HAVE SPARED MYSELF SO MANY SOS CALLS, WHEN FINALLY I HEARD SOUNDS OF LIFE – THE TOILET FLUSHING IN PHIL’S BATHROOM. WITH RENEWED, NOW JUSTIFIED HOPE I STARTED MY OUTCRIES AGAIN, AND IT FINALLY HAPPENED: MY HUSBAND CAME IN. I SAID “CALL 911 – DO NOT TRY TO PICK ME UP.” HE WAS RELUCTANT, BUT FINALLY GAVE IN. THEY WANTED TO TALK TO ME. AFTER I ASSURED THEM THAT I DID NOT NEED TO GO TO A HOSPITAL, THEY SAID THAT THEY WERE ALREADY ON THEIR WAY. SHORTLY AFTER, THE BLESSED KNOCK ON THE DOOR. TO MY SURPRISE, INSTEAD OF TWO HUSKY MEN, TWO HUSKY, CHEERFUL WOMEN WALKED IN, AND THEY MANAGED TO PICK ME UP AND PUT ME TO BED. I SLEEP IN THE NUDE, BECAUSE I CANNOT STAND A NIGHTGOWN TWISTING AROUND ME IN BED. IT ONLY WOULD HAVE BOTHERED ME AS I WAS SCRAPING MYSELF BACKWARD ALONG THE BATHROOM FLOOR.

I REALIZE NOW HOW IT HAPPENED. MOST OF THE TIME I AM SO TIRED WHEN I GO TO THE BATHROOM AT NIGHT THAT I ALMOST GO TO SLEEP, WHEN I SIT THERE. I MUST REALLY HAVE NODDED OFF AND SLIPPED OFF WITH THE SEAT IN MY SLEEP, SO VERY TIRED THAT I DID NOT KNOW WHERE I WOKE UP.

Zooky responded with: “Last week I was out working in the yard when I fell. Like you, I cannot get up by myself. I was about to reach for my “panic pendant” which would have set off the alarm in the house and automatically dialed 911. But, suddenly I had neighbors, seemingly coming out of the woodwork, rushing over to help me. My wife was in the house saw what was happening, and also rushed out to help me, too. One just never knows when a fall will happen………”

Debra also had her testimony: “I know how you feel. I fall sometimes too. One time, I was feeling okay so I went out to the garden to pick tomatoes. Well, the tomatoes went everywhere when I fell. I can not get up by myself. My husband was on the tractor by the garden but he is hard of hearing. I yelled out, waved my arms in the air- he did not see me. Luckily, I had my cell phone on me. I phoned my parents and oldest son, hey were not home. I kept trying and finally got a hold of my oldest son after 2 hours. My son and step-father came over and got the attention of my husband. It took two to get me up and into the house. I could not move from the waist down, was incontinent – it was a mess. finally got feeling back into lower half of my body and could move legs. I used the wheelchair for few days straight.”

All of us have different causative illnesses, but we all suffer from the same exhaustion. We all suffer from fatigue, which affects our balance. We might stumble and fall; we might be suddenly become so weak and tired that we land on the floor. II have had to teach myself how to fall, after a few very scary incidents due to medications. The tizinidine, in particular, affected me so strongly when I first began to take it that I took several very bad and sudden tumbles that injured me. My leg muscles felt as if they had turned to water; they were suddenly rippling, completely unable to support me. I collapsed – once so badly that I bruised my face when I hit the floor. It can still happen to me when I’ve done too much physical exertion in the course of the day, and then stayed up for too long after taking my last day’s pills. The combination of tianzidine, amitriptyline, and now the klonopin , mixed with the lack of physical reserves, is like a cosh to the back of my head.

At least I can recognize that cosh-like rapid descent these days, and can prepare. I am exceedingly cautious when going up and down the stairs, even going so far as to creep up the stairs on my hands and knees if I think my muscles can’t hold me. This is made even more imperative because a friend of mine died of head trauma when hurrying down a staircase just like ours, tripping and tumbling. I’ve gotten up from my chair, and felt so weak that I’ve immediately sat down again. On the nights when I don’t think I can make it, I will crawl to the couch if I have to. There are even the times when I am not even able to make it to the couch. Two weeks ago, the exhaustion came upon me quickly, as it often does, while I sat at my desk about 1 A.m. “Time to head upstairs,” I thought, and began to make my way. First I had to collect the next day’s pill box, the iPod, and anything else I was bringing upstairs. Then I realized that the kitchen light were still on. Between the time I walked to the kitchen, shut off the lights, and then emerged to pass through the dining room, my legs went wobbly. I knew I couldn’t even make it to the couch. Suddenly I realized I couldn’t even stand up anymore. I lowered myself to the floor, and crawled under the dining room table, where the carpet is cleanest. That is where I slept until 5:30 in the morning. But at least I didn’t fall.

Those are the falls that I can predict. The ones that truly worry me are these that take place out of my rotten sense of balance. Stepping onto uneven surfaces, even so much as a branch in the yard or sidewalk pavement that has shifted, is enough to bring me down if I am not very careful. The cane is useful for stability, but perhaps a walking stick would be even better. It certainly wouldn’t give me that “worn-out old granny” feeling, which is doubly pronounced when I look at my intractable gray hair popping out from the still-brunette!.

There is also the fact that the extra weight I am carrying makes the odds of falling higher, as well as making those falls more dangerous. I am determined to keep losing weight; I’ve lost almost thirty pounds since Christmas 2010. All the drugs make it very difficult. I have learned that I must eat as much protein as possible, and that simple carbs of *any* kind – sugar, flour, rice and potatoes – make me immediately gain. It makes it difficult to eat sandwiches or burgers! At least I was able to segregate the cookies, treats, and chips into a separate kitchen cabinet, which I never open. What’s even more difficult is rejecting my husband’s frequent entreaties to “Here. Just try this one bit,” of the ice cream or the cookies that he loves – and that he knows *I* have loved. That proffered spoonful of Ben and Jerry’s looks so delicious! But developing the ability to say, “No, thank you,” is like working on lifting weights: the more I practice, the easier the load becomes.

The CPS Alliance had another member join today. We have anywhere from five to ten new members join every week. Each person who joins has to explain why they want to be a part of the Alliance; that’s the way we can cut down on spammers. Since I am one of the administrators, I get to see the reasons that people give. Sometimes, thjey give a paragraph of explanation or so. Other times, it’s just one or two lines. Either way, I get to see all the miseries that have brought new members to our group.

The explanations that hit the hardest are the ones like we got today: “My husband has CPS since 2003. He had a spinal cord tumor that was surgically removed but suffered cord damage.I need support..”

My heart sinks when I read about a situation like that. For one thing, it’s from the spouse-caregiver, not the patient. The caregivers and family members can suffer tremendously as a result of having to live with someone beloved who is in constant pain. The pain causes depression and bad tempers, and that is difficult for anyone to live with on a daily basis – just ask my husband.

Then there is the fact that this case of CPS was caused by a medical procedure. You would be appalled if you knew hoew many of our CPSA members acquired CPS as the ressult of a medical procedure. They wake up from the anesthesia with this terrible burning pain, and often the doctors themselves are mystified. No one warned them that this might occur – all too often because the physicians themselves never knew that is was a possibility. We actually have a whole family on our Charter Committee team, who are part of the CPSA because the 32 year old husband acquired CPS after a simple biopsy on his thalamus. Ending up with Central Pain Syndrome because of a medical test or simple procedure is the very anthesis of the Hippocratic dictum to “First, do no harm.”

But the thing that truly causes my sadness is that her husband has Spinal CPS, because there are really no effective treatments for Spinal CPS. Canavero makes the important point in his textbook that Spinal CPS and Brain CPS are similar in pain presentation, and in cause (a lesion of the somatic tract of the Central Nervous System). But they are completely different in the way that they can be treated. I believe in his conclusion, which is that the difference between the two forms of CPS is due to the two differing primary neurotransmitters that carry pain signals. The brain uses GABA to convey and inhibit pain signals. The spine, however, uses glycine for those function.

There are the drugs that we Brain CPS survivors can turn to: they are the drugs that are Gabanergic. I depend upon one, gabapentin, to hold down the hellfire, and I consider myself extremely fortunate to have it as a recourse. There are others: vigabatrin, tiagabine, lamotrigine, pregabalin and others. As one study says, “Although originally developed as anticonvulsants for epilepsy, they appear to have wider applications for use in affective disorders, especially bipolar depression, anxiety disorders and pain conditions.” As individuals, we may have to test-drive several of them before we find one that truly helps us. But we have them.

But from everything that we have shared on the Alliance board, and everything that I have read and googled, there appear to be no effective glycinergic drugs, that is, drugs that would affect glycine as a transmitter. So there are no drugs that can effectively control Spinal Central Pain.

Spinal CPS patients are left with narcotics such as morphine and oxycodone. Morphine intrathecal pumps that are installed directly into the spine are often of help, but there is often the risk of infections, or the pump itself can cause problems, and of course it needs to be refilled. It can work well for years, and suddenly develop problems. Many of our Spinal CPS members rely on Fentanyl patches, an extremely strong narcotic that was developed for treating the pain of cancer.

The real problem with all of these opiates is that they are sedating, as I found out when I was in the hospital last November. I was given intravenous morphine for pain, and, boy, did it make the pain go away. With the pain also went my ability to concentrate, my ability to stay awake, and, most of all, my concern about being able to do anything. To put it vulgarly, I didn’t give a f@ck about anything; everything was fine, as long as you didn’t try to keep me awake or make me think. I couldn’t follow an argument; I couldn’t follow a plot. I finally understood how it felt to be “on the nod.”

For me, it was only a few days of contented utter lassitude. But it must no way to live. It must be so stressful of any close relationship, especially a marriage.

Just imagining it makes me only more convinced that the Central Pain Syndrome Foundation has to be started, and soon.

Here they are, all the prescriptions that keep me alive and able to do anything at all. You can see the Rxes; they are in the white-topped vials. There are abbreviated names of the tops so that I can tell which is which when looking into this drawer. There are three strengths of gabapentin (gab): 600, 800, and 100 mg. That’s because I have to take that drug every 5 to 6 hours. Because the CPS pain gets worse the longer I am awake, the prescription is designed to give me higher doses in the evening and at bedtime (1000 mg) as opposed to the morning and afternoon (600 mg.)

You can see some of the others. There’s “levo,” which is levothyroxine, a generic form of thyroid hormone replacement. I began to take that in the year after my son was born, because I developed Hashimoto’s Thyroiditis, an autoimmune disease, after the pregnancy. There are 20 million people in the US diagnosed with thyroid disease, and another estimated 13 million who haven’t been diagnosed yet. Do you always feel tired and run down? Are you gaining weight you can’t shake off? Is your thinking cloudy, as if you can’t focus? Is your hair dry? Get your thyroid hormone levels checked, especially if you are a woman. Why? Because one in six women have this disorder. My mother certainly had it, especially after the births on my younger brothers one year and three days apart. She simply went to bed after that, and couldn’t get up. Her levels were never checked until she moved out close to 15 years later. After she was put on Synthroid (the non-generic form), she brightened right up and was able to work for almost thirty years. So be sure to get your thyroid levels checked!

Normally, it would bum someone out (as we used to say) to be told that they were going to need a pill a day, every day, for the rest of their life, just to be “normal” again. There is a tremendous sadness that comes over you when you are told something like that, because it means that your body is no longer a self-healing object With most illnesses, diseases, or injuries, we expect our body to be fully repaired after the healing process. Even if we need intervention in the form of antibiotics or splints, we trust that our bodies will be back to unscathed. This is the main factor of youth: the body is growing and repairing itself. The day that you are told that you have developed a disease or an injury that the body will not be able to repair, and that will require daily intervention is the day you begin to believe that you are now growing old.

Of course, that day happens to all of us. If you are lucky, it won’t happen until you are in your senior years, after 65 or so. If you are truly unfortunate, it may happen when you are a baby or a young child. the whole “Parade of Muscular Dystrophy children” that used to be held at the end of the Jerry Lewis telethon (“Look at us, we’re walking..”) was designed to open the pockets of donors because the sight of obviously crippled children is just so wrong to our eyes. It’s the old people that we expect to see using walkers, crutches and canes.We even have a somewhat superstitious belief that if we only have the correct diet and exercise enough, that we will be able to prolong our youthfulness. While it’s true that diet and exercise maximize you chances at health, they obviously cannot forestall problems caused bt genetics, environmental poisoning, and a whole raft of other issues that can rip away the body’s ability to heal itself.

By the time I was told that I needed levo every morning, I was already used to taking a pill everyday: an antidepressant. I tried a lot of different ones, since there were so many that were developed in the 80s and 90s. I’d started on amitriptyline back in 1980, the first time I was in graduate school. I’d lost my ability to write; I would sit in front of my beautiful Olivetti, and couldn’t put a word to paper. Each sentence that I attempted to type sounded stupider, both more ignorant and more cliched, than the last. My writer’s block got so bad that I ended up at the UMDNJ Mental Health Clinic, where they gave psychiatric residents and students the ability to practice their therapeutic techniques on real people. I was grateful for the help. That was the first time that I began taking an anti-depressant; the tricyclics were just coming into favor as depression-fighters. Later, there would be variants of tricyclics, and then whole new class, the SSRIs. I took some of those, as well. Every three years or so, I would rebel against the need to take a pill to make me feel normal, and would wean myself off them. But in a year or two, I’d fall into a major, sometimes hospitalization-worthy, depression, and end up back on the antidepressants again. Finally, after my blow-out in late September 2001, my doctor told me that I might have to accept the fact that I would have to one every day for the rest of my life.

At that point, there was no fighting the number of prescriptions that were being written for me. In addition to thyroid hormones and brain neurotransmitter-affecting drugs, there were also the drugs that I was being prescribe for the as-yet-unnamed auto-immune disease that I’d developed at the end of 1999. (That got me put on prednisone, which helped with some of the awful joint pain, but made me swell up like the Stay-Puft Marshmallow Man. (I eventually weaned myself off that horrid medication, when my joint pain flares calmed down.) There were high-powered, prescription strength-only analgesics. Two years into the auto-immune syndrome, my blood pressure began to shoot up like a bottle rocket, and so even blood pressure medications became a daily addition.Today I take 4 in all.

Five years later, the stroke brought yet more prescriptions into my life: anti-convulsants, muscles relaxers, even more blood pressure med, prescription-strength potassium, and, of course, a nightly aspirin.. This year, I added a drug for my thalamic tremor. There are also supplements: SAM-E, Vitamin D, Vitamin Bs,Vitamin C, Chromium Picolinate, EFAs..

“Pill Day” is the day of the week when I must pull out all the bottles and vials, and distribute the week’s dosages into the little compartments of the “pill keeper.” This is what it looks like when the task is completed:

It seems as if every week, “Pill Day” arrives before I know it. I often don’t recognize that i forgot all about it until I reach for the next day’s “strip” on my way to bed (have to have them at my bedside for the 6 AM partaking). Then I have to spend 8 or 10 minutes putting together the first compartment of the next day’s, at the very least. What a pain in the ass to fill all of these! It takes at least 20 minutes, and the palm of my left hand is dried out because of the dust from all of the medications it’s held while my right hand has been dropping them into the little boxes. But it would be an even greater pain if I didn’t have them. I wonder frequently about how to reduce the number. Could I be detoxed from the anti-depressants? Can I lose a few HBP meds if I lose some more weight? Will there ever be a cure – or at least a more effective treatment – for CPS?

I used to see people like me when I worked in the pharmacy as a pre-teen and teenager. (If you were old enough to do arithmetic, and tall enough to work the cash register, my father would use his kids as counter help.) They would come in to pick up big bags of pills. Back then, high blood pressure was mainly treated with diuretics, and depression with Librium, Valium, and Nembutal. There were a lot of prescriptions for barbiturates and amphetamines. My father would often make a comment about the folks who picked up the big bags: “She hasn’t got long,” or “His heart isn’t working the right way anymore,” or just “It’s the folks like that that keep me in business.” Nowadays, I know that pharmaceutical companies aren’t looking for ways to heal us, so much as they want ways that they can get us needing a prescription *every day for the rest of our lives.* One of the members of the FB CPS group, Tiffany, was explaining yesterday that she is only 27, and doesn’t want to have to take seven pills four times a day, seven days a week, for the rest of her life.

None of us do. But the option of not having them also terrifies me. If I were ever arrested, and thrown into a cell without my meds, I would die in screaming pain. The only question would be how soon. That is the truth for all of us with CPS.